A qualitative research of idiopathic granulomatous mastitis patients

WANG Fengjuan，CHEN Sujin，YAN Yahong，CHEN Yuezhi

（1.Department of Health Care Ward；2.Department of Breast Surgery；3.Department of Nursing，The First Affiliated Hospital of Xiamen University，Xiamen，Fujian，361012）

ABSTRACT：Objective To thoroughly investigate the genuine emotional experience of patients with idiopathic granulomatous mastitis（IGM）pre-and post-treatment.Methods A purposive sampling method was adopted to select 13 patients with idiopathic granulomatous mastitis（IGM）as study objects during Feb to Dec 2016 who were all from the Department of Breast Surgery，the first affiliated hospital of Xiamen University.In addition，hermeneutic phenomenological method was performed in different ways including face-to-face interview，semi-structured interview，indepth interview，live recording and subject analysis of these collected data in hermeneutics rotation principle.Results The genuine emotional experience of patients with idiopathic granulomatous mastitis（IGM）pre-and post-treatment could be summarized into six subjects，through the thoroughly analysis of interview data，including change of sleep state，fatigue，lack of knowledge of disease，difficult to adapt to treatment state，worries and fears，and positive views of prosthesis implantation.Conclusion Lifestyle change among patient was prevalent pre-idiopathic granulomatous mastitis，and patient always suffered from negative emotions and lack of disease knowledge once developed it.Therefore，it would demand medical staff to be committed to health education，communication with patients，and discovery problems in the first time.Moreover，positive pertinent measures were appealed to improve confidence to overcome the suffering，and to ease or eliminate the negative emotion for recovery promotion.

KEY WORDS：idiopathic granulomatous mastitis；qualitative research；systematic health education；continuous nursing

Idiopathic granulomatous mastitis（IGM）is known for the pathological feature of granulomatous inflammation which is characterized by microabscess and multiple inflammatory cellular infiltration around lobules of mammary glands，and it is a kind of rare benign breast inflammatory for unknown etiology［1-2］.Besides，it also is known as granulomatous lobular mastitis（GLM）with the only 1.8% incidence rate among benign mammary inflammatory［3］.In recent years，the incidence of IGM tends to be more prevalent among the younger age group，which is significantly characterized by high misdiagnosis rate，long course，painful process，and high recurrence rate post-operation.It’s reported that the recurrence rate of patients with subtotal breast resection is as high as 5.5%～50%［4-5］.There are enormous obstacles caused by long–term mental stress and anxiety among patients with IGM because of high repeatability and high recurrence rate.However，there are few reports about qualitative research of IGM patients in China so far.We adopted hermeneutic phenomenological method to thoroughly investigate the genuine emotional experience of patients with IGM dur-ing the treatment，in order to provide a basis for making effective nursing interventions.

1 Study objects and methods

1.1 Study objects

A purposive sampling method was adopted to select female 13 patients with IGM as study objects during Feb to Dec 2016 who were all from the department of breast surgery，the first affiliated hospital of Xiamen University.All of 13 patients met the following conditions：aged from 25 years to 35 years，average age（30.00±2.70）years；average age of onset（29.70±2.80）years；average body mass index（BMI）（23.57±3.03）；age of child at the onset from 1 to 4 years，average age of child（2.19±0.98）years.Education background：five patients had a junior high school and technical secondary school degree（38.46%），two of senior high school degree（15.38%）；six ofcollegedegreeorabove（46.15%）.Job position：eight of housewives（61.54%），five of common employees（38.46%）.Onset seasons：11 in spring and summer（84.62%），two in autumn and winter（15.38%）.

Inclusion criteria as follows：① Pathological diagnosis of IGM.②Mastectomy post-operation.③Patient had only given birth to one child.④Familiar with own condition and good language expression.⑤ Aged≥18 years. ⑥ Both of mental conditions and physical conditions meet the demands of research.⑦Informed consent and voluntary participation in study.

Exclusion criteria as follows：① Patient had already given birth to two children or much more.②Pre-operation and non-operative treatment.③Age＜18 years. ④ Didn’t know about their own disease condition.⑤Language and/or cognitive impairment.⑥Physical or mental conditions were not allowed to participate in this study.

The sample capacity was determined by duplication data，saturation of information，and there was no longer appearance of any new subjects when data analysis.

1.2 Methods

This study adopted the hermeneutic phenomenological method（HPM）of Van Manen（1990）in designing the qualitative research，and collected data in different ways including face-to-face interview，semi-structured interview，in-depth interview，note-taking，recording，and observation.

1.2.1 Methods of data collection

The patients were interviewed by researcher in a privacy and undisturbed room,and researchers collected data through observation,note-taking,recording,etc.there were three stages of interview time:the firstday post-operation,three dayspostoperation,first day before discharge.The contents of interview were designed one by one in advance to guide the whole interview process,and to avoid omission which affected the integrity and accuracy of data collection.We established a intimate,honest,and trustworthy relationship with interviewees by Janice's[6]strategy in order to ensure the reliability and validity of results.This interview didn’t adopt any scales or measurement tools but interviewers.Pay attention to observe and record the tone of voice,change of eyes,change of subtle expression,and movement of the whole body of interviewee during interview.In addition,grasp each interview time between 30 minutes and 60 minutes,and record the whole conversation with the permission of interviewees.The interview recording would guarantee that researcher was able to grasp all important details and avoided any deviations.After the end of each interview,all of conversation contents and notes ought to be systematically arranged in time and be manually analyzed.

1.2.2 Methods of data analysis

Notes and recording data from researchers were inputted into computer within 24 hours in the end of each interview,and then printed a transcript for systematical analysis.Data analysis would be performed by the traditional seven-step analysis of Colaizzi[7]:①To organize the overall sequential written materials of recording,notes,and observation data.②To repeatedly read and think about all of interview materials in order to summarize and refine subjects.③To encode the subjects.④To gather the coded subjects and to build a subject group.⑤To conclude re-sults and write out an accurate and detailed description.⑥To sum up similar views to form a essential structure of phenomena.⑦To return final data to interviewees to verify the authenticity of data.

1.2.3 Completely open-ended questions of interview contents.

The interview outline for patients with IGM as follows:①How to find IGM?Any initial symptoms(mass,fever,or local pain)?What was the time of onset?Disease course?Whether to be treated(what treatment)?②What about the sleeping prior to onset?Such as sleep duration,sleep time and quality.Great stress of life,economy or work,etc?Often fatigue or not?③How many children have been given birth to?Child-bearing age?Breast-feeding or not?Unobstructed breast milk or not when feeding?Feeding time?With history of mastitis or not?How old is the youngest child?Have oral drugs or not(contraception,anti psychotic,etc)?④Smoking or not?And what about the spouse or other family members?Any tuberculosis exposure?⑤Whether to keep pets at home?What about the contact time?⑥The influence of family,life and work during the suffering.⑦Any confidence on rehabilitation?What’s the attitude on IGM?⑧The most troubling problems during recovery.⑨How to deal with the negative emotions?What helps or supports can make you happy?⑩Whether to worry about personal image damage or not?Any knowledge about IGM?How to obtain the knowledge?⑪What do you get the most out of the treatment review or rehabilitation?

1.3 Ethics

This study was approved by the ethics committee of the first affiliated hospital of Xiamen University.Primary nurse and doctor conducted a systematic assessment of the patient's physical and psychological conditions，as well explained that there was no correlation between interview contents and disease severity before interview.The names were numbered（N1 ～ N13）to protect the privacy of patients.Both patient and interviewer should sign informed consent prior to the interview and we promised to protect the privacy of patients.Moreover，all of these data were coded in order to earn the trust，understanding and agreement of patients.

1.4 Quality control

Researchers already established a good relationship with patients before data collection.The data arrangement and analysis of interview and observation were conducted independently by two researchers who were familiar with the qualitative research methods and techniques.Furthermore，they discussed and accessed to information about the inconsistencies of analysis，and verified the results with interviewees.

2 Results

2.1 General data of study objects

Finally，13 female patients who received mastectomy with IGM were successfully interviewed to achieve a saturation of information.Table 1 shows the general information of 13 patients.

Table 1 The general information of patients（n=13）

2.2 Refining subjects

The genuine emotional experience of patients with idiopathicgranulomatousmastitis（IGM）pre-and post-treatment could be summarized into six subjects，through the thoroughly analysis of interview data，including change of sleep state，fatigue，lack of knowledge of disease，difficult to adapt to treatment state，worries and fears，and positive views of prosthesis implantation.

2.2.1 Change of sleep state

More than 60% of patients complained about the shortened sleep time,poor sleep quality after they developed IGM,and more than 60.0% of patients had a sleeping disorder for taking care of baby.N1:“I sleep less than 6 hours every night and often wake up at night with restless for taking care of my baby before becoming ill.”N3:“I am not sleeping very well especially after giving birth to my child”.It is difficult for me to fall asleep that I spend at least one hour to do it and 2-3 hours awaked with the whole night in a daze.N6:“I endure a poor sleeping during illness for pain.”In addition,circadian clock disturbance was also one of the causes of sleep disorders.N11:“I used to do the night shift which mean working at night and resting in daytime that led to my severely poor sleep quality.”N12:“Itis great stress for me before falling sick;I was so afraid of making mistake that I often stayed up late working with poor rest,even I occasionally waked up several times to go toilet at night.”

2.2.2 Fatigue

Life stress and the long course of rehabilitation were the main sources of fatigue for patients.N2:“It is my first time to have a baby that I feel a lot of stress and often become tired for the lack of experience to taking care of my baby.”N4:“ This is my second recurrence for admission again.For the first time,a long-term conservative treatment was performed for me and my condition also obtained improvement.However,to my sad,it relapsed again.At first,I feel no bad but as time goes on,I feel more and more tired.”

2.2.3 Lack of knowledge of disease

Totally 13 patients had uneven understanding of IGM and the access channels were mainly from medical communication and network in hospital.N1:“I don’'t know much about this disease that I think it's just a kind of common inflammation,and know about it mainly from network and doctors.”N3:“It was first time to appear symptoms about six month later after weaning.The main symptoms were characterized by a sudden sharp pain,inflammation,no omens,abscesses accompanying with no any color changes,no ulceration,and in the width of two fingers at first.Both breasts were attacked in rotation.The symptoms usually appeared in 10 days post menstruation,also were affected by great fluctuation of emotion and great stress.I didn’t know that it was a plasma cell mastitis at first so that I visited the local township hospital to be prescribe with some antiinflammatory drugs and Chinese herb,and obtained remission but no disappearance of mass.”N4:“I just know a little about IGM,such as attentions,treatments,but not details.I know it mainly from hospital and doctor when visiting,also sometimes from Baidu.”N5:“I simply know about the treatment regimen,operation method,etiology of IGM by Baidu platform.”N6:“I get the relevant knowledge of IGM from the introduction by ward-mate and medical staff.”

2.2.4 Difficult to adapt to treatment state

Patients were difficult to adapt to fall sick,diagnosis,treatment and role changes of family,working and society.Moreover,11 interviewees had a role conflict between the patient and mother.N1:“I couldn’t take care of my baby which was the most trouble things for me during hospitalization.I wanted to accompany with my baby so much.”N5:“ I could not take care of my little baby since onset.”Some patients had difficulty in role conversion between of a social worker and patient.N8:“Always asking for a leave which affected my work so seriously that many tasks couldn’t be finished on time and I had to entrusted to others.I almost felt be abandoned by my work.”

2.2.5 Worries and fears

The worries and fears could be summarized into six aspects,including worrying about the prognosis,taking care of child,personal image damage,pain,impact of working and sexual life.N1:“I am so afraid of recurrence post-operation because of this rare disease with high relapse rate.”N3:“If mastectomy,it will affect my sexual life.After all,I am young now.However,I also know that it will attack again and again,even repeatedly ulceration.For that,I feel there is no any hope of radical cure.”N4:“It’s a refractory disease that I have suffered a second recurrence.I even worry about another recurrence and personal image damage pre-operation.After all,it makes me imperfect.”N5:“Pain is the most terrible things for me.I am so sensitive to pain that I feel fatigue,weakness and nervousness as soon as it attacks.”N8:“There are two things that mostly worry me.For one thing is the child.For another is the ugly appearance of breast.”

2.2.6 Positive views of prosthesis implantation

Totally 13 patients were glad to be implanted with prosthesis.N2:“I really care about the personal image that the prosthesis realizes my wish of still being a complete woman.”N9:“I was very worried about personal image damage pre-operation,while the prosthesis implantation resolved this problem.”N11:“Actually,I don’t mind the personal image as long as health but prosthesis implantation teach me that it is right for my choice.”

3 Discussion

All objects of this qualitative research were from our hospital with geographical，living habits and other limitations.There were two main problems of patients in this research：lack of knowledge of disease，physical and mental fatigue because of worries of life，work，and disease treatment.IGM is often misdiagnosed as breast cancer，breast tuberculosis，plasma cell mastitis for the nonspecific clinical manifestation.IGM gains more and more clinical attention and it is first reported in 1972［8］.Six cases of patients with IGM were firstly reported by MA Guohua in China in 1986［9］but with unclear etiology.It is reported that there may be several reasons associating with etiology by Fatih Altintoprak［10］，such as autoimmune response，hormonal imbalance，microbial infection，smoking，and alpha-1 anti trypsin deficiency，etc.IGM prefers multipara who are in childbearing period［11］.Most of them suffered from a sub-healthy status，such as obstructed lactation，slightly great stress，and long-term anxiety of mental status.Some patients were not treated timely because of work，life，family，ignorance of symptoms or even refusal because of its sensitive position.Others suffered from longterm pain for conservative treatment.With a retrospective study conducted by Gulten Kiyak［12］shows that the diagnosis of IGM is based on the results of pathological report without uniform treatment regimen at present.Breast disease is a kind of psychosomatic disease of which the cognition and emotional control play an important role in the recovery.Therefore，patients could improve the awareness of disease through health education，emotional comfort and continuous management to relieve negative emotion，progression，as well to benefit to recovery post-operation and reduce recurrence rate.

3.1 Systematic health education during hospitalization to improve the cognition of inpatients

Health education means propaganda and education of disease implemented by health care providers.It mainly includes relevant etiology，symptom，treatment and nursing of disease，which runs through the whole hospitalization process.An effective and comprehensive health education improve patients’awareness of disease to relieve anxiety and enhance the trust on medical staff.Nowadays，more and more people realize that the purpose of medicine is not only to cure disease，but al-so to improve the quality of life.Study shows that health education can improve health cognition of patients to make much more conscious choice and behavior which are beneficial to health and finally improve the survival quality［13］.As a means of protecting and promoting human health，health education had been attracted worldwide attention，and for which systematic health education came into being.On the basis of traditional health education，systematic health education emphasized the continuity of mission time，individual pertinence，and participation of family members.According to the nursing requirements，the needs of patients，the diversification，and phase education in different stages，medical staff should provide the most appropriate health education for patients on purpose［14］.There were several steps of health education process with specific as follows：Firstly，we ought to collect the relevant data of patients including living habits，progression of disease，metal status to detect and analyze the specific problems.Then，we had to make a targeted and specific health education plan to carry out the plan with organization，purposiveness and systematicness.Moreover，a regular and quantitative evaluation of the health education contents shall be performed to correct the wrong cognition.Finally，we achieved the goal of improving the cognition of health education for patients.Systematic health education mainly included five steps：assessment，diagnosis，planning，implementation，and evaluation. Assessment would be performed in four stages：firstly，assessment of the age，education background，sleep status，economic conditions，family relationships and psychological demands of patient on admission；secondly，assessment of patient’s knowledge of IGM and the preoperative preparation；thirdly，assessmentofoperative effect， nutrition， diet，sleep，degree of pain，and compliance of rehabilitation training post-operation；and the assessment of the mastery of knowledge and rehabilitation gymnastics，as well the cognition of self-nursing on discharge.According to the assessment of different stages，we put forward the nursing diagnosis and made a targeted health education program to perform the oral health education on admission，pre-and post-operation and discharge.At the same time，the illustrated health education brochures would be distributed to patients in corresponding time，and it would be systematically explained，demonstrated and discussed by the responsible nurses.This study showed that brochures with images makes patient understand the information more easily than plain text，and words better than voice.What’s more，take-home booklet with comprehensive information is better than the ordinary education handbook in lowering the difficulty and regret of patient's decision［15-17］.Primary nurse need to evaluate the effectiveness after health education as soon as possible，and to complete the health education，evaluation，implement and feedback by the same person.Nurse-patient communication was helpful to obtain the first-hand experience of patient，to connect theory with practice，and to expand the content and form of rehabilitation for nurses.And patients with IGM would have a better understanding of health through the purposeful and planned education，and strengthen health maintenance.In addition，patients would improve the self–nursing and self-care with a better application of scientific knowledge to cooperate with treatment and nursing in a more positive attitude.Last but no least，the wish of reducing the complication rate and improving the quality of life would be realized.Most of patients accepted prosthesis implantation，which not only to help the recovery of personal image，but also to rebuild their confidence.Therefore，it was important to encourage patients to receive prosthesis implantation，to help them choose models，implantation，and guidance of daily nursing.

3.2 Recruitment of volunteers to build a breast health club of IGM

Breast health club of IGM made up of breast surgery medical staff and patients with IGM in our hospital.As a volunteer，every patient had to take part in our activities and missions positively.And as a club sponsors，our medical staff were responsi-ble for making departmental plans，including the IGM academic forum facing to society and personal experience sharing by volunteer.It was helpful to improve patients’knowledge of IGM through academic forum.And personal experience sharing boosted determination to overcome disease and confidence of treatment of patients，because it helped patients meet more ward-mates who were in convalescent stage post successful treatment，and those who returned to society.To some extent，personal experience sharing also played an important role in psychological counseling.The study shows that it is helpful to improve the psychological status and quality of life for patients through health education in a planned and organized way［18］.This qualitative research revealed the young children were the most of stress for patients pre-and post-treatment.Volunteers with IGM shared their own experience in a positive，enthusiastic attitude，successful ways to fight against with disease，and personal views preand post-treatment，which promoted patients to adapt the role conversion and delivered a healthy lifestyle.

3.3 Construction and improvement of network interaction platform and cooperation of multidisciplinary to perfect the continuous management model of internal and external integration

Continuous nursing usually refers to the continuation from hospital to family，including hospital discharge plan made by hospital，referral，continuous follow-up，and health guidance for patient who return to family or community，and this nursing aims that patients receive continuous nursing，treatment，health guidance and other health supports［19］.The term "Continuing Nursing" is defined by the American Geriatrics Association，and the concept of“Extending Nursing Care”was first introduced in China in the 1990’s.That leads to a reform of nursing object and nursing quality in medical field，and then begins to explore and develop extending nursing care，to combine the follow-up of routine，specialized，special disease with community health services of discharged patients，as well to establish multi-sector cooperation mechanism in hospital.All of these measures promote the continuing nursing to be an important part of high quality nursing care.Continuing nursing includes regular follow-up to know the basic information of patient，and performs the corresponding health education to urge patients to develop healthy habits.There are several kinds of follow–up，such as telephone follow-up，short message follow-up，outpatient follow-up，QQ follow-up，and WeChat follow-up.The study shows that patients with WeChat follow-up have a better understanding of relevant knowledge than those with traditional follow-up（such as short message，telephone，outpatient），and it greatly improves their selfmanagement ability and treatment compliance［20-21］.Nowadays，WeChat has become the most popular interactive communication software in China.With the development of times，it would be an inevitable trend that network technology services in medical through the construction of the WeChat platform.WeChat platform played an very important role in extensive health education with its broad population，including inpatient，discharged patients and healthy social groups，etc.The construction of network platform of multidisciplinary cooperative professionalization system would be the trend of connection between doctors and patients.Network platform of multidisciplinary cooperative professionalization system is a general team made up of specialists， nurses， psychiatrists， pathologists，and physical therapists.With the construction of WeChat subscription or WeChat group of IGM and the creation of two-dimensional code through We-Chat platform，patients and family members could look up the professional knowledge or ask questions about themselves after scanning two-dimensional code to follow WeChat subscription or join the group.And then patients would receive a professional answer through the subscription or group.Patients edited WeChat contents or pictures about themselves and send them to health care providers through the WeChat platform or group.After that，specialists and nurses will answer it with illustrated professional guidance after analyzing problems.Diversified network guidance forms include text edition，voice communication，video display and image interpretation，which guaranteed the professional guidance for discharged patients.

3.4 To gradually improve the social comments of women.

We had to be committed to the equality between men and women，the abolishment of bad customs of pursuing the female appearance and figure；the propaganda and guidance of women in self-confidence，achievement，and good moral characters.Finally，the loss or inferiority for the body variations would be eliminated，and a inclusive，caring social atmosphere also would be established.patients would face society in a positive and optimistic attitude.

4 Conclusion

Patients with IGM usually accompanied with lifestyle changes，and poor emotions because of great stress of family，work，life，and cognition defects about disease after falling sick.Therefore，medical staff had to strengthen health education and psychological counseling，to communicate with patients in time，and to know about the patients thoroughly.Meanwhile，systematic and individualized health education and general continuous nursing shall be performed in order to discover problems at the first time.Moreover，we need to take positive corresponding measures to improve the confidence of patients against disease，to ease or eliminate the bad emotions，and to promote recovery.